Understanding Living with Tracheostomy Ventilation for Motor Neurone Disease and the Implications for Quality of Life
This study will explore patient, family and health and care professional experiences of using tracheostomy ventilation (TV) to support breathing for people with MND. TV is not often used by MND patients in the UK but rates of TV are much higher in other countries. The reasons for this are not clear and currently TV is not covered in UK guidance for the care of people with MND.
To understand what it is like to live with TV, the researchers want to speak to people with MND who have TV, their family members, and professionals involved in their care. The study will use interviews to allow participants to ‘talk’ in whatever way they prefer, such as by telephone, video call, emails or text messages.
By speaking to those with experience of TV, they aim to understand more about what is involved and the impact on patients and families. Study outcomes will include updated information for patients and families, and contributions to national guidance, commissioning, and staff training on care for those with MND. For those suitable for TV, better understanding may lead to greater choice about their future treatment and care.
What does taking part involve?
The study has two parts. People with MND can choose to take part in Part 1 or Part 2 (the same participants will not be asked to take part in both).
Part 1: Case studies
Around 6 people with MND who have TV will be able to take part in an in-depth case study. This will involve taking part in an initial interview, and if possible, a series of shorter follow-up interviews over approximately 6 months. Interviews can take place as a one-off event, or as a series of shorter conversations. They can take place over the phone, via video (using e.g. Teams or Skype) or as written exchanges (e.g. email). The number and length of interviews will be guided by the participant.
The person with MND will be asked to nominate family member(s) and healthcare professional(s) who are involved in their care, who we can approach to take part in an interview as part of the case study. Where possible, the researchers would like people to take photographs of items and spaces they feel illustrate their daily living. They will also ask participants to draw or describe who and what services are involved in providing care to produce a simple visual map of their support network.
Part 2: Single interviews
The researchers would like to interview people with MND who have TV, or family members (including bereaved family members) or healthcare professionals who have experience of supporting someone with MND to use TV. Interviews can take place as a one-off event, or as a series of shorter conversations. They can take place over the phone, via video (using e.g. Teams or Skype) or as written exchanges (e.g. email).
Who can take part?
• People with MND who are dependent on TV to support their breathing
• Current family members of a person with MND who is dependent on TV to support their breathing
• Bereaved family members of a person with MND who used TV. Bereavement to have taken place a minimum of 8 weeks and maximum of 3 years prior to study involvement.
• Healthcare professionals with experience of supporting someone with MND to use TV
All participants must be over 18 years old and able to use an online video conferencing tool, email or phone
If a family member needs to fund additional time for a paid carer to provide care for their relative with MND so that the family member can participate in the study, the cost of covering any additional care will be reimbursed.
This study is funded by the MND Association.